My Body, My Self

I can already tell that this post is going to be a little ramble-ish, so readers be warned. I think I'm just feeling the need to blow off a little post-hospital steam and try to make sense of some of the changes 2009 seems to bringing with it. It's only two weeks into the year and I already have a really deep sense that this is a new era. But I promise I'll stop myself if I start to sound too much like an outdated textbook from Philosophy of Illness 101. And by the way they should totally start offering that as a course in college.

I think most of what I'm feeling right now can be explained as a weird type of conversation between my body and some other side of myself - maybe my spirit or my mind or my soul. Call it what you like, but I guess as a "sick" person I have always had some sort of distinction in my head between the two. My body, I always assumed on some level, was a shell for whatever else might compose the larger, more real me. Not only a shell, mind you, but an inadequate one: constantly frought with questions and concerns and random illnesses that served only to get in the way of my "true" self, which of course is always happy, full of energy, excited to tackle any task, loving and giving beyond measure, and basically more or less perfect. Obviously.

Lately I've been starting to reevaluate that concept. Not entirely; I still do see a distinction between my body and my spirit, and that distinction has in some ways only grown wider as my body has begun to succumb to an illness against which it simply has no chance (sorry, Dr. Beall, I'm calling it like I see it on this one). But maybe the distinction isn't as clear-cut as I once believed. Maybe my body, instead of being some unfortunate shell unprepared to deal with the stresses of housing such a radiant being inside it, is actually a pretty tough cookie deserving of a little praise in its (her?) own right. After all, this body has taken me 27 years into the abyss, for lack of a better image, and more days have been good than bad by a long shot. Maybe, then, my body is as much a part of my "true" self -- as much of a giver, a fighter, and a survivor -- as any other part of me. And then of course, maybe that means that the rest of me -- that amazing wonder of a woman that I always saw as so unfairly held back -- well, maybe she isn't exactly the inhuman ideal I've always so considered her.

In other words, maybe both parts of me are wonderful. And both parts flawed. And most importantly, both parts are the real me, together.

The rationale behind this not-so-radical realization is actually my job. Yep, I'm blogging about work. Surprised? It seems to be all I talk about lately, or at least it is now that I'm done complaining about hospital food. But honestly, it's just such a big deal for me. And I am really struggling with finding that delicate mind (spirit)/body balance. It's just not something I'm really grasping right now.

I'm 27. I worked REALLY hard to get where I am. I love my job. I work with amazing people. I feel challenged. I feel fulfilled. And I know these things are important. I KNOW that. But are they important enough to risk my health? Risk infection after infection and scar tissue build up that can ultimately only mean one thing? And if not, then where does the compromise begin? How do you negotiate a plan that neither you, nor your work, nor your doctor is ever going to be completely satisfied with, because all of you want and need different things? What's the jumping off point?

I'm not sure how to look my parents in the eye and tell them that I, their youngest daughter for whom they would (and have) sacrifice so much, is willing to potentially jeopardize the amount of time we have left together in order to feel more personally fulfilled. I don't know how to explain to people that it's worth it for me to face being cut in half and put back together again years earlier than I otherwise would have just so that I can continue to show up for work in the morning. I don't know how to tell my work that even though I seem fine and always accept each assignment with an enthusiastic nod and an excited smile, this workload is, literally, killing me. I don't know how to make a group of wonderful but very high-achieving attorneys understand that although I return from each new infection and round of IVs with the same spring in my step, my lungs are irreversibily damaged. I don't know how to say these things out loud, maybe because I don't know yet how to say them fully to myself.

I keep coming back to that way-overused line from Steel Magnolias: "I would rather have 30 minutes of wonderful than a lifetime of nothing special." But of course it's not nearly that simple. Or that cute.

I want to be happy without being selfish. I want to be active without being irresponsible. I want to remain as healthy as I can while still living my life. I want to look both parts of myself -- my body and my spirit -- straight in the eye and tell them I understand where they're coming from and that I care.

And that I'm trying.